Saturday, June 30, 2007

Our appointment with the surgeon went well yesterday. He and his staff are very nice! He is outgoing and friendly and very easy to talk with and ask questions. We were asked a lot of questions about her history and why we wanted a G-tube. It almost felt "elective" and I guess in some ways it is, though it isn't really like we have a choice either. The doctor said he could do the G-tube "if that was what we wanted'. I told him that if he had other suggestions that I would be willing to try them. He commented that it looked like we had tried everything. I feel like we have. I want to be thorough and at the same time find guidance from the many wonderful people God has placed in our path. I am very thankful that I feel we have had excellent medical care. Perfect? No. I do think we have all done our best though and I have no regrets. Perhaps with hindsight I would have done things differently, but isn't that always the case?

The surgeon wants to do an Upper GI to rule out any twisting (there was another word) or other problems in her intestines. He didn't think we'd find anything, but just wanted to be sure. He also said he would be willing to do a swallow study if the pediatrician or feeding therapist wanted them done. He wanted to find out this before scheduling them as apparently it could be done at the same time. I'm not sure of all that either involves - though know that I need to find answers.

I told him I didn't think she had reflux and offered to have him watch her eat. He said he was just planning to take my word for it. Arching her back is what I'm asked about. She pulls back but not in pain, but more as a signal that she doesn't want it! She did the same thing there. It had been over 4 hours since she had last eaten and she took a couple of sips, swallowed and was done. *sigh* My poor little girl.

We have tentatively scheduled surgery for Tuesday 17 July. She will need to undergo the testing mentioned above in addition to some cardiac work prior to her surgery. The surgeon thought we would be in the hospital 2-3 days. He also said that in comparision to the cardiac surgery she has already had that this would be much simpler. The surgery itself lasting about an hour. The date will be dependant on being able to schedule all of the other necessary testing prior to this day. Since next week is a holiday for many it pushes things back a bit.

The type of G-tube he will be using is called a BARD. He thought that the open incision was a better route for Eliana than a laproscopic insertion down her throat. I couldn't agree more!!! I don't want her to have anything else negative happening to her throat! There will be an incision through the skin, abdominal wall and into the stomach. The tube part that is outside of her body will lie flat and is more secure.

If you want to read more information, here are a couple of links I found late last night.

http://www.pedisurg.com/PtEduc/Tube_Feeding.htm

http://www.opitznet.org/daily.html

One of the most encouraging things that I heard was that "often feeding really takes off" after getting a G-tube. That is my hope and prayer for our little sweetheart.

Prayer requests:

Wisdom in knowing the tests she needs prior to the surgery.

Health for Eliana and the surgical team/nursing staff.

Successful operation with no complications.

If there are problems affecting her ability to eat that they would be found.

Pre-op testing to go smoothly and to indicate any problems that might exist.

Ability to eat. I really want this to improve so that we can move to a more normal method of feeding.

Peace as we wait ... and wait ... and wait. Waiting is never easy. I'm trying to just fall back into God's loving arms and relax.

Boldness. I missed an opportunity yesterday to share how much God has carried me through all of this trial. I feel badly for just blowing it. I don't know why I just chickened out - though I did go back and share that I was remiss in not stating it the first time. What a disappointment for me to see how weak I still am. Yet, what sweet comfort to know that He is there - waiting for me - loving me in spite of the times that I fail over and over again. What a comfort to know that He is strong. All the time. In spite of my weakness, He is able to do great things in and through my life. Thank you Lord!

We still have many questions about what the G-tube will be like. I keep hearing over and over again that it is so much easier than the NG tube. The NG has been hard. I feel like I've been confined to our home for much of the last 6 months in addition to the difficulty of placing it over and over again. I have a series of pictures of the care involved in the NG. If can remember, I'll try to post them.

Blessed is the man who perseveres under trial, beause when he has stood the test, he will receive the crown of life that God has promised to those who love him. James 1:12

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This blog will share some of our family adventures as we seek to follow God's call on our lives. I'll share about homeschooling, family life, medical issues, special needs and my faith in Jesus. Blessings to you!